By Archana SharmaJaipur, July 22 : Ten-month-old Tanishk Singh is battling the toughest challenge of his life as his chest muscles are weak and lack strength to help him breathe properly.He suffers from a rare genetic disorder.
Genetic Spinal Muscular Atrophy Type-1 ails this little boy from Rajasthan’s Nagaur district.The disorder is characterized by weakness and wasting (atrophy) in muscles used for movement (skeletal muscles).
His hapless parents are crying for help as Tanishk needs an injection worth Rs 16 crore.The parents are poor and hail from a small village.
They pin their hope on crowdfunding and appeal to all who can afford to help them out.
Shaitan Singh, the father of the kid visited Nagaur MP Hanuman Beniwal, who assured them all help and also spoke to the Superintendent of JK Lone Hospital in Jaipur and other paediatricians regarding Tanishk’s treatment.
The father told IANS: “Tanishk’s life is incomplete without the said gene.The solution to all Tanishk’s problems is just one injection, but the cost of this one injection is Rs 16 crore, which is not easy for us to buy.Tanishk is our only child, I work as a lawyer in a small town like Parbatsar.
He said Tanishk’s trouble started when he was four-five months old.
“We did not know about the disease at first, but later Priyanshu Mathur, our pediatrician at J.K.Lone Hospital Jaipur, said that Tanishk is suffering from SMA.
“Till now, we have been able to keep things under control for Tanihk with the help of exercise, so that all the muscles of his body remain active.Our family members take turns to make him exercise for three to four hours a day.His treatment is the world’s most expensive injection Zolgensma,” informed Singh.
Three-year-old Ayansh Gupta from Hyderabad, who was battling rare spinal muscular atrophy, received the gift of life on June 9 as the money required for injection was raised for him through crowdfunding.
“Our hopes have increased ever since we came to know about Ayansh’s story of ‘rebirth’.This country belongs to the kind and compassionate people and I hope everyone will definitely help to save my son’s life,” said Deepika Kanwar with folded hands urging people to contribute so that her only son can live.